The COVID-19 Long-Term Care situation in India

The COVID-19 Long-Term Care situation in India
The COVID-19 Long-Term Care situation in India
   Jayeeta Rajagopalan, Saadiya Hurzuk, Faheem Arshad, Premkumar
                        Raja and Suvarna Alladi
                                          Last updated 28th May 2020

 Jayeeta Rajagopalan MSc (National Institute of Mental Health and Neurosciences)
 Saadiya Hurzuk MSc (Alzheimer’s and Related Disorder’s Society of India)
 Faheem Arshad MD DM (National Institute of Mental Health and Neurosciences)
 Premkumar Raja MA MPhil (Nightingales Medical Trust)
 Suvarna Alladi DM (National Institute of Mental Health and Neurosciences)
 This document is available through the website, which was set up in March 2020 as a rapidly shared
 collection of resources for community and institution-based long-term care responses to Covid-19. The website
 is hosted by CPEC at the London School of Economics and Political Science and draws on the resources of the
 International Long Term Care Policy Network.
 Corrections and comments are welcome at This document was last updated on 28th May
 2020 and may be subject to revision.
 Copyright: © 2020 The Author(s). This is an open-access document distributed under the terms of the Creative
 Commons Attribution NonCommercial-NoDerivs 3.0 Unported International License (CC BY-NC-ND 3.0), which
 permits unrestricted use, distribution, and reproduction in any medium, provided the original author and source
 are credited. See
 Suggested citation
 Rajagopalan. J., Huzruk. S., Arshad. F., Raja.P., Alladi. S. (2020). The COVID-19 Long-Term Care situation in India.
 LTCcovid, International Long-Term Care Policy Network, CPEC-LSE, 28th May 2020.
 We would like to thank the STRiDE India team, Ms Meera Pattabiraman and Mr. R. Narendhar from Alzheimer’s
 and Related Disorder Society of India and Dr Priya Thomas and Divya Ballal from the National Institute of Mental
 Health and Neurosciences for their valuable contributions to this report. We would like to express our gratitude
 to Dr Radha Murthy from Nightingales Medical Trust, Bengaluru, Mr Sailesh Mishra from Silver Innings, Mumbai
 and Dr. Amar Shinde from Jagruti Rehabilitation centre, Pune for sharing their experiences at their respective
 facilities. We also thank Adelina Comas-Herrera and Klara Lorenz-Dant from the CPEC/LSE for providing us with
 the report template. |The Impact of COVID-19 on long-term care in
India                                                                                                                   1
1. Key points
    •   While there are a large number of elderly people with comorbidities in India, there is a
        limited data available on the proportion with long-term care needs.
    •   There is no formal or organized long-term care system in the country. Long-term care is
        community based, with families primarily providing care.
    •   The numbers of positive cases of COVID 19 in India have risen significantly since the first
        case was reported on January 30th 2020. As of 28th May 2020, there are 86,100 active
        cases, 67,691 cured cases and 4,531 deaths. There is no data on the prevalence of
        COVID-19 in people with long-term care needs or number of deaths.
    •   The government has introduced several population level measures to contain the
        spread of COVID-19. These include: a nationwide lockdown to encourage physical
        distancing, establishing centres for COVID-19 testing, creating dedicated facilities for
        treatment, an app to facilitate contact tracing and guidelines/advisories for older people
        and people with disabilities.
    •   Care homes are largely unregulated and there is limited data available on their activities.
        As a result, it is difficult to determine the extent to which infection protocol measures
        have been adopted by all care homes in the country.
    •   There are no government guidelines directed specifically towards unpaid carers and
        people with dementia during the pandemic (as of May 28th 2020).

2. Introduction
India has a population of 1.3 billion, which makes it the second most populated country in the
world. Approximately, 8.6% of the total population are aged 60 and over 1 (Fig 1) and this is
expected to rise to almost 19 % by 2050 2. There is high prevalence of non-communicable (60%
of all deaths) 3 and communicable diseases (27.5% of all deaths) 4, which contribute towards the
multiple co-morbidities in the older population 5. Long-term care is largely unorganised,
informal and based in the community, with the families predominantly providing care. |The Impact of COVID-19 on long-term care in
India                                                                                            2
Figure 1: Population of India in 2020

Source: United Nations 6

3.       Impact of COVID19 so far
3.1.     Number of positive cases in the population and deaths
The first case of COVD-19 was reported on 30th January in the southern state of Kerala in India.
As of 28th May 2020, there are 86,100 active cases, 67,691 cured cases and 4,531 deaths
reported by the Ministry of Health and Family Welfare (MoHFW) 7.The largest number of
confirmed cases is in the state of Maharashtra—home to the financial capital Mumbai—; the
dark blue region depicted in Figure 2
Figure 2: Geographical distribution of confirmed COVID-19 cases.

Source: MoHFW 7

An age-wise analysis conducted by the MoHFW (on April 4th) has highlighted that from the total
cases confirmed, 9% were between aged 0-20 years, 42% were between the ages of 21-40, 33%
between 41-60 years of age and 17% were aged 60 years and over 8. Over 50.5% of the total |The Impact of COVID-19 on long-term care in
India                                                                                              3
deaths reported were in individuals 60 years and over and approximately 73% of all deaths
have been among individuals with comorbidities 9. The case fatality rate (as of 26th May 2020)
has been reported as 2.87% and has decreased from the 3.3% reported in mid-April 10. The
mortality per population has been reported as 0.3 deaths per 100,000 (as reported on May 26th
2020) 10.
A total of 3,362,136 samples have been tested for COVID 19 infection, as of May 28th 2020 11.
The Indian Council of Medical Research (ICMR) has published guidelines 12 for COVID-19 testing
in India. The guidelines recommend that asymptomatic individuals who have had “direct and
high-risk contact” be tested within 5-10 days of coming in contact and that the following
symptomatic (influenza like illness) individuals also be tested: those with international travel
history, frontline/health care workers, contact with a confirmed case, living in containment
areas, hospitalized patients and migrants/returnees within seven days of ailment. The rates of
testing have increased 1000 fold since the beginning of the pandemic 13. In January 2020, there
was only one COVID-19 testing centre in the country 13. As of May 27th 2020, there are
approximately 624 labs conducting testing 14. This is likely to further increase with time.

3.2.    Population level measures to contain spread of COVID-19
The Indian government has taken a number of measures to contain the spread of COVID-19:
    •   A travel advisory recommending that all travel to China be avoided was issued on the
        17th of January and the very next day thermal screening of passengers travelling from
        China and Hong Kong was started at airports 15. Once the first case of COVID-19 was
        confirmed in the country on 30th January, a number of travel restrictions were brought
        into place. On 3rd of March, the government suspended visas for countries such as Iran,
        Italy, Japan, China and South Korea and mandatory health screening was initiated for
        those travelling from Singapore, South Korea, Japan, Italy, Nepal, Taiwan, Indonesia,
        Thailand, Iran, Hong Kong, Vietnam and China 15. By the end of March, railway services,
        domestic and international flights were completely suspended 15. Since early May, some
        railway services (currently only to transport migrants) and domestic flights have
    •   On March 22nd, the Prime Minister proposed a ‘Janta curfew’ (public curfew), during
        which people were requested to stay home from 7 am to 9pm in order to facilitate
        social distancing and reduce the spread of COVID-19 16. Soon after, the government
        announced a nationwide lockdown from March 25th to April 14th 17. There has been a
        phased relaxation of lockdown measures since the initial announcement. During PHASE
        1 [March 25th to April 14th], facilities such as public transport, schools, shopping malls,
        offices, and restaurants (delivery services were permitted) were closed. People were
        only allowed to leave their homes for essential services (groceries, pharmacies,
        emergency services at hospitals), which remained open throughout this time. While the
        government’s rapid response has slowed down the spread of infection, the pandemic
        has proven to be a double-edged sword in the sense that controlling its spread has
        impacted a vulnerable group of population: migrant workers who lost their jobs and |The Impact of COVID-19 on long-term care in
India                                                                                             4
were left stranded, resulting in a large-scale exodus. While authorities have made
        efforts to help this vulnerable population, this has exposed the vulnerabilities in society
        and raised concerns regarding the existing inequalities. As cases continued to rise, the
        government initiated PHASE 2[15th April to 3rd May] of lockdown, which involved a two-
        week extension of lockdown measures, along with significant restrictions in
        hotspots/containment zones 18. PHASE 3 [4th May to 17th May] of lockdown involved a
        further two-week extension of lockdown measures, although with considerable
        relaxations in certain areas 19. The Ministry of Home Affairs (MHA) conducted risk
        profiling of districts by dividing them into red, orange and green zones and substantial
        easing of restrictions were permitted in green and orange zones 19. PHASE 4 [18th May to
        ongoing] of lockdown is ongoing at the time of writing this report. Educational
        institutes, malls, restaurants, cinema halls, religious sites continue to remain closed, but
        businesses and public transport vehicles such as taxis, buses and auto-rickshaws have
        been allowed to resume services in non containment zones 20. All permitted non-
        essential activities are allowed only between 7am and 7pm, with night curfew still in
        force 20.
    •   The government has communicated with the public throughout the pandemic. Regular
        conferences with members of the health ministry are carried out via multiple media
        outlets. The MoHFW website regularly updates the number of active cases and deaths
        across various states in the country 7. The MoHFW has also published a health advisory
        21 for the elderly population and provided guidelines to maintain mental and physical

        wellbeing on their website 7. Moreover, in order to make the public more aware of their
        risks of contracting COVID-19, the Ministry of Electronic and Information Technology
        launched a contact-tracing app known as ‘Aarogya Setu’ (bridge to health) on April 2nd
        22. This app uses Bluetooth technology to inform an app user if they are/have been in

        the vicinity of someone who has tested positive and also has a self-assessment
        questionnaire 23. Those who are identified to be in contact with positive cases or require
        guidance after a self-assessment are approached by the National Health Authority 23.
    •   The government has published guidelines and advisories for at risk/vulnerable
        populations such as older people 21 and people living with disabilities 24. Certain states
        have developed specific measures to identify and support at risk/vulnerable
        populations. Kerala, for example, has launched a senior citizen cell with the aim of
        reaching out to vulnerable older people and providing them with essential items such as
        food and medications during the pandemic 25. Meanwhile, the southern state of
        Karnataka has been conducting a statewide survey to identify at risk/vulnerable
        households (50 lakh identified as of May 28th 2020) in order to monitor their health and
        provide medical support when required 26. The survey has revealed that 1 in 3 homes in
        the state are vulnerable to COVID-19 26.

3.3.    Rates of infection and mortality among long-term care users and staff
As of May 28th 2020, there is no data available on the rates of infection and mortality among
long-term care centres (old age homes, residential facilities, day care centres etc.) in India. |The Impact of COVID-19 on long-term care in
India                                                                                             5
4. Brief background to the long-term care system
There is currently no data available on the proportion of population with long-term care needs
in the country. In alignment with the challenges highlighted by the World Health Organization 27
with regard to long-term care needs, those unique to the long-term care system in India have
been identified:
    •   There is no formal or organized public service delivery system for long-term care in the
        country 28. However, programmes such as the Integrated Programme for Older Persons,
        National Programme for Healthcare of Elderly, National Mental Health Programme and
        National Palliative Programme all include components of long-term care 28.
    •   Long-term care in India is largely community based. Family remains the cornerstone of
        care in India and as a result the long-term care system is largely informal (unpaid
        carers), with significant diversity in care provision across various regions and
        socioeconomic groups.
    •   The institutional model of care may be unpopular in the country due to sociocultural
        factors 29.
    •   Few long-term care services such as old age homes, day care centres, residential
        facilities and domiciliary care services are available 30. These are predominantly provided
        by private and not-for-profit organizations, although a few public facilities also exist.
    •   Public funding towards long-term care is limited. An extremely small proportion (0.1%)
        of the country’s GDP is reported to be spent on long-term care 31.
    •   There are a few public benefit schemes such as disability benefits and pension schemes,
        but the amount provided is very small and variable across states 28. Out-of-pocket
        payments (OOP) are predominantly how people with long-term care needs access
        services 30.
    •   Paid care workers such as home care attenders are often untrained and provide support
        mainly with activities of daily living. Unpaid carers such as family caregivers are
        predominantly women; it is the wives, daughters or daughters-in-law who primarily
        provide care 32.
    •   Many Indians live in multigenerational households (joint family system), which allows
        for the rotation of caregivers in order to provide the primary caregiver with some much
        needed respite time. However, this model of care is slowly breaking down due to
        demographic and economic transitions (rise in nuclear families).

5. Long-term care policy and practice measures
5.1.    Whole sector measures
As of May 28th 2020, there are no specific measures taken by the government addressing long-
term care during the pandemic. |The Impact of COVID-19 on long-term care in
India                                                                                             6
5.2.    Care coordination issues
5.2.1. Hospital discharges to the community
General guidelines 33 for hospital discharge of COVID-19 patients has been issued and later
revised on May 9th 2020 by the MoHFW. The guidelines categorize discharge policy by clinical
severity. For mild cases, the guidelines recommend that patients can be discharged 10 days
after the development of symptoms, as long as there is no fever for 3 consecutive days. For
moderate cases, the guidelines suggest that if a patient has no fever after three days and their
oxygen saturation remains over 95% over the following four days, then the patient can be
discharged 10 days after the development of symptoms, but only if they have no fever, if
breathlessness has resolved and they do not require oxygen support. In both moderate and
mild cases, it is recommended that patients isolate themselves at home for seven days after
discharge 33. For severe cases, the guidelines recommend that discharge is dependent on
clinical improvement and if the patient tests negative (RT-PCR test) after symptoms have
5.2.2 Hospital discharges to residential and nursing homes
As of May 28th 2020, there is no data available on hospital discharges to residential and nursing
homes in India.

5.3. Care homes (including supported living, residential and nursing homes,
skilled nursing facilities)
While there are no government issued guidelines directed specifically towards care homes in
India during the COVID-19 pandemic (as of May 28th 2020), a few of the care homes (provided
by NGOs and private organizations) we were able to contact are adopting the COVID-19
infection prevention guidelines 34 published by the government. Whether such measures have
been adopted by all care homes in the country is difficult to ascertain, as care homes are largely
unregulated and limited data is available on the total number of such homes and their activities
(as of May 28th 2020).
5.3.1. Prevention of COVID19 infections
The care homes consulted have introduced strict infection protocol measures at their facilities.
This includes stringent sanitization of facilities (e.g. disinfecting floors) and training of staff to
implement hygiene practices among residents (e.g. encouraging hand washing and use of hand
sanitizers). They have stopped new admissions, reduced entry of staff members that are not in-
house, restricted all visitors (including family members) and sent back a few residents whose
families preferred to provide care for them at home.
5.3.2. Controlling spread once infection is suspected or has entered a facility
No cases of COVID-19 have been reported to the best of our knowledge at the care homes that
were contacted (as of May 28th 2020). Care homes have plans in place for when or if they have
a positive case/s. Separate rooms have been allocated for quarantining residents that develop
influenza like symptoms. If symptoms continue to persist despite medications, residents will be
transferred to the designated hospitals in line with government directives. |The Impact of COVID-19 on long-term care in
India                                                                                                7
5.3.3. Managing staff availability and wellbeing
Care homes have taken multiple measures to manage staff availability and wellbeing. Staff have
been minimized to reduce risks of infection, but partial or full salaries are continued to be given
to staff that are not coming into the centre. This has increased financial strain among
administrations, but they see no alternative options, as they do not want to lose trained
caregiving staff. With respect to in-house staff, care homes are providing them with incentives
(e.g. free food) and also taking measures to motivate and de-stress staff through regular
5.3.4. Provision of health care and palliative care in care homes during COVID-19
Care homes are continuing to address medical needs and provide palliative care at their
facilities. Residential facilities specific to dementia (such as those provided by Nightingales
Medical Trust (NMT)) have professionals such as trained caregivers, family physicians,
psychologist, therapists and psychiatrists, who are well equipped to manage medical issues and
provide palliative care.
While there are no specific government guidelines for palliative care provision during COVID-19
(as of May 28th 2020), Pallium India—a national registered charitable trust and knowledge
partner to the Kerala government— has published an e-book 35 developed by a task force of
palliative care experts containing guidelines for palliative care during COVID-19 targeted
towards health professionals. This may be useful to professionals working in care homes.

5.4.    Community-based care
5.4.1. Home-based care
Members of the family generally provide home-based care. In some cases, families may hire
paid care attenders to help support the person they are providing care for with activities of
daily living. However, due to measures in place to reduce risks of infection (such as the
lockdown), these paid care attenders have been unable to come in. Families have had to fill this
gap in care provision themselves.
5.4.2. Day care
There is data available on the measures adopted by dementia specific day care centres. This is
elaborated in 5.7.

5.5.    Impact on unpaid carers and measures to support them
There is limited published information on the impact of the pandemic on family caregivers
(unpaid carers) in India as of end of May. Primary caregivers (family members) are likely to be
spending a greater proportion of their time on providing care during the pandemic than prior
to. This can significantly increase caregiver stress, as families may struggle to adapt to changes
in routines. With the temporary closure of facilities such as day care centres and the inability of
paid home carers to come in, many family caregivers may have limited respite time. Other than
ensuring that the person they are providing care for remains engaged; carers also have to take
additional preventative measures to reduce risks of infection, which can lead to further |The Impact of COVID-19 on long-term care in
India                                                                                             8
increase in stress experienced by caregivers. In addition, the pay cuts and job losses associated
with the pandemic may exacerbate the financial burden experienced by family caregivers.
Currently (as of May 28th 2020), there are no measures issued by the government that are
specifically targeted towards addressing the needs of unpaid carers during the pandemic.
However, a few initiatives may indirectly provide support to unpaid carers at this time. The
Ministry of Health and Family Welfare (MoHFW) has issued an advisory 21 directed to elderly
population, which may provide guidance to caregivers of older people. The MoHFW has also
established a psychosocial behavioural helpline, released videos on meditation and yoga for
stress management and provided tips to take care of one’s own mental health and mental
health of elderly during this period on their website 7.

5.6. Impact on people with intellectual disabilities and measures to support
According to Census (2011) data 36, 2.2% of the total population (1.3 billion) are living with a
disability in India. On March 27th 2020, two days after a nationwide lockdown was introduced,
the Ministry of Social Justice and Empowerment (MSJE) published comprehensive guidelines 24
to states/UTs for the protection of persons with disabilities during the COVID-19 pandemic.
These guidelines emphasize the importance of caregivers being able to reach the person they
are providing care to and recommend for passes be issued for caregivers to travel during the
lockdown. The guidelines also recommend that essential services (such as food, medications)
be delivered to people with disabilities at their place of residence and stresses that all
information available on COVID-19 should be in formats (braille, audio tapes, videos with
subtitles etc.) accessible to persons with disabilities.
A number of guidelines and advisories specific to COVID-19 have also been published by The
National Institute for Empowerment of Persons with Intellectual Disabilities (under the MSJE)
on their official website 37. These include handouts/ guidelines for: informing people with
disabilities about COVID-19, parents of children with special needs and addressing challenging
behaviours in a young person at home 37.
In addition, certain states (e.g. Telangana) also launched toll free helplines to support people
with disabilities and senior citizens during the lockdown 38.

5.7.    Impact on people living with dementia and measures to support them
There are currently 5.29 million people living with dementia in India 30, though only 1 in 10
people with dementia are likely to receive a diagnosis and hence the numbers may be
substantially higher 39. People living with dementia have an increased risk of infection — due to
difficulties in understanding or remembering preventive measures such as social distancing and
frequent hand washing– and are more susceptible to complications associated with COVID-19
due to various co-morbidities 40. The efforts taken to contain the spread of COVID-19 infection
and protect at risk populations have significantly impacted the routines of people with
dementia. People with dementia are restricted to their houses, unable to carry out daily
activities like visiting day care centres for cognitive stimulation exercises or engaging in outdoor
physical activities. Their paid care attenders are also unable to come in due to travel |The Impact of COVID-19 on long-term care in
India                                                                                               9
restrictions. Such changes in routine can result in the development of distressed behaviours
such as confusion, restlessness and wandering among people with dementia. This can create
substantial stress among caregivers, who are unable to visit their physicians for guidance due to
the suspension of routine healthcare services and also fears of exposing themselves and the
person with dementia to COVID-19.
While there have been no government measures specific to people with dementia, the
government has issued a health advisory for elderly population 21 and guidelines for people
with disabilities 24, which are applicable to people with dementia. Some public hospitals (e.g.
National Institute of Mental Health and Neurosciences) have also initiated telemedicine
consultations 40 and issued guidelines for caregivers of older people with dementia 41.
Efforts are also being carried out by private and non-governmental organizations to support
people with dementia and their families. With day care facilities being temporarily suspended
in line with government directives, NGOs (e.g. Alzheimer’s Related Disorder’s Society of India
(ARDSI), Nightingales Medical Trust (NMT) and Silver Inning’s) have published guidelines for
family caregivers for people with dementia 42, are reaching out to families via social media
platforms, providing one-on-one counselling via telephone and holding caregiver support
meetings via Zoom 40. The Nightingales Medical Trust (NMT), for example, has also developed
an app known as DemKonnect to offer expert advice to family members during the pandemic
and engage persons with dementia through activities such as brain games and guided
reminiscence therapy.
For people with dementia residing in long-term care facilities —predominantly provided by
NGOs and private organizations— steps have been taken to reduce risks of infection and
protect residents. NGOs have adopted sanitization and disinfection measures and are providing
regular training to staff to facilitate implementation of such preventive measures. They have
restricted visitors (e.g. stopped new admissions, restricted staff that do not reside at the facility
and restricted family members) and created separate rooms/wards to isolate residents that
have influenza like symptoms. Staff members are also being motivated through de-stressing
activities, regular counselling and preparation of duty rosters in such a way that no staff
member is overly burdened with responsibilities. It is uncertain to what extent such measures
have been adopted by all residential facilities and care homes in the country, as there is limited
data available on this as of May 28th 2020.

6. Lessons learnt so far
    •   The COVID 19 pandemic has highlighted the significant vulnerabilities in public health
        and social care systems and demonstrated the urgent need to recognize and address
        these issues in order to reduce the impact of the current pandemic and improve
        responses to future public health emergencies.
    •   There has been a successful coming together of experts from medical, social and policy
        domains. Sustained collaboration between these groups is critical to reframe and adapt
        existing models of service in the country. |The Impact of COVID-19 on long-term care in
India                                                                                              10
•   The COVID 19 crisis has revealed the critical role played by traditional systems of
        caregiving (family-based care) in long term care, while underscoring the need to develop
        formal ways of providing long-term care and support to carers.

6.1.    Short-term calls for action
    •   There is a crucial need for people with long-term care needs and their carers to be
        identified and acknowledged as vulnerable groups so that immediate efforts can be
        directed towards supporting these populations.
    •   There is an urgent need for information on the prevalence of COVID-19 in individuals
        with long-term care needs and their carers, as there is a clear gap in evidence with
        respect to this.
    •   Guidelines on reducing and managing risks of infection in long-term care centres need
        to be developed as soon as possible.
    •   It is critical to ensure that vulnerable people with long-term care needs and their carers
        have access to medical and psychological support services during this period of

6.2.    Longer term policy implications
    •   The COVID 19 pandemic has demonstrated the major gaps in the long-term care system
        and the resulting consequences this has had on people with long-term care needs and
        their families. It is imperative to establish an organized system that is able to effectively
        also support informal care provision. The first step towards achieving this would be to
        develop a national long-term care policy or plan.

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India                                                                                               11
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India                                                                                         12
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India                                                                                           13
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India                                                                                        15
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